This weekend, we drove up to Culpeper, Virginia, to see someone who wasn’t there. She’s rarely there, even though she can barely move, and although others insist they’ve seen her, I believe she hasn’t been there in quite a while.
I’m talking about my mother, who’s in late Parkinson’s and in the throes of dementia. She and my dad still live in their own house, but they have around-the-clock in-home care for her. And I’m not sure she even knows where she is. She’s confined to a wheelchair, and can barely hold onto a fork or cup to feed herself, but in her mind, she goes everywhere and does everything. That’s probably a mercy. When she speaks, she tells us of going places – from walking out onto their deck, to driving to work, to going to see an old friend – or she asks Dad to take her home from whatever event she thinks she’s attending.
The hallucinations can be uplifting or heartbreaking. She might look at an empty spot on the floor, smile, and say, “Hi, Kitty!” Or she might get agitated because she thinks her mother – who passed away 31 years ago – just walked down the hall, and is calling for her. She has imagined a Frenchman living in a bathtub in their yard, a white dog that walks in through a hole in the wall where she’s certain the contractors forgot to put the last piece of plywood when they built the house, and a strange woman she’s certain is there to have an affair with my dad.
In some ways, the world is her oyster – she can go anywhere and do anything – but in other ways, she’s a prisoner to whatever strange whims or chemical reactions take place inside her brain, and outside her control. But wherever she is, she’s clearly not there with us. We can’t tell if this is Parkinson’s dementia or the side effect of her Sinemet, which is the double-edged sword of this disease – could be the disease causing a problem, or it could be the medication she has to take for the disease.
Then again, it could be a natural progression of old age and senility. It happened to my grandmother, who spent her later years staring out the living room window and telling us “those men” were back, digging up the trees at the end of our lot. She used to send me out into the front yard, yelling toward the road to leave those trees alone, dammit. That used to do the trick, too – Nanny would be satisfied, and the hallucination would be over. (As would my reputation with the neighbors.)
With Mom, there’s no such solution. Nothing will pull her back, whether we play along or try to tell her the truth. That can make things tough when the hallucination is that Dad is cheating on her, or that Kim and I are getting a divorce – no amount of arguing can convince her otherwise. So I’m in favor of letting her stay in whatever reality she’s created. On a recent visit, she asked me if I’d seen my parents lately. I have no idea who she thought I was, but what would have been the point of correcting her? That would only embarrass her or make her confrontational. I still remember my older brother George sitting next to her when she asked me that – he looked at me, grinned, and said, “Yeah, Dan, have you?” All I could say was, “No, I haven’t seen my mom in a long time.”
Others might think that’s cruel, or that we’re having a laugh at her expense, but they would be wrong. George wasn’t grinning at Mom, he was grinning at my discomfort, damn him. And I wasn’t trying to be smarmy with an ironic answer, I was trying simply to placate her. Just like Saturday night, when she asked me, “Where’s Nanny?” What good would it do to tell her Nanny’d been dead for 31 years? I just said she’d been gone for a while. When Mom asked me where she went, I answered honestly when I told her I don’t know. Of course, if she had continued to press, I’m not sure what would have happened, but she didn’t. She was off on another journey, and like her, I was wondering where my mother had gone.
There’s one exception to this rule – I want to identify myself. When we arrived Saturday, I walked up to her and said, “Hi, Mom!” She looked at me in confusion and answered, “Hi…George.” Years ago, it would have meant nothing for her to get the wrong name; she had eight kids, and was constantly calling us by each others’ names. But she knew who we were, regardless. Not so this time; I could see in her eyes that she didn’t know me, and resorted to giving me an identity she’s familiar with. But I wanted her to know who I was, especially if we were going to have any shot at conversation that night, so I told her, “Actually, it’s Dan. George will be here tomorrow.”
Not that it mattered, because other than asking me where Nanny was, we had no other conversation. I talked to my dad and sister a little, but Mom sat and stared at me, trying to work out why this guy was sitting there in front of her, talking about God knows what. She made a couple attempts to converse with my dad and sister, but only gibberish came out – that’s the newest symptom, and so far the hardest one to witness. She’ll try to say something, but will only babble, having no idea herself what she’s trying to say.
A couple of good things happened while we were there, though. We’d brought our new shih tzu puppy along for the trip, and finally showed him to Mom on Sunday. (I was concerned Saturday evening that his sudden appearance might confuse her.) I brought him into the house in his carrier, and held it up for her to see. She peered inside, but I couldn’t tell if she recognized anything in that fluffy Rorschach test. I asked her if she wanted to pet him, and she croaked out a barely legible, “Yeah.” So I took him out of the carrier and held him up in front of her face. She reached up tentatively, and stroked his soft long hair. During that moment, Rocky was as still as I’ve ever seen him – normally, he’s a wiggly bundle of energy, squirming, licking, and nipping playfully. But while she did her best to pet him, he stayed still and let her grip his leg. I think he could sense that she’s ill, and it was a touching connection to see. She clearly enjoyed holding his leg and stroking his fur, and he was fine with it.
On Sunday, George was picking on Matthew and Christopher for being so engulfed in their electronics. My parents’ basement is a treasure trove of old, broken toys, and George told Matthew he’d found something down there for Matthew to look at. It was my younger brother Bryan’s old Mr. Machine toy, barely functional after 40 years. George had fun showing it to Matthew and telling him that’s what kids used to have to play with instead of electronics. Matthew’s too old for a wind-up toy like that, but he was fascinated with the idea that it was once fun for somebody. I explained to him that it once ran faster, and whistled an actual tune instead of giving out the pathetic toots it was producing in its old age. He devoted a few minutes to trying to make it work again, winding the key and giving it a push to see if a forced start was all it needed.
While he was doing that, I happened to glance at Mom, and saw something wonderful – a beatific smile on her face as she watched Matthew “playing with” Mr. Machine. I realized he looks a lot like Bryan did when he was a little boy, and figured in her mind, she was back in her youth, watching Bryan play with his favorite toy. And it made her happy. I haven’t seen true happiness on her face in at least five years – only pain, fear, confusion, and/or discouragement. But in that moment, she was in the happiest place on earth, watching her little boy again. George’s prank had brought serendipity.
A little while later, we collected our things to go, and I gave her a hug and kiss and wished her a Merry Christmas. She gurgled out the words “Merry Christmas” and looked at me as if I were the contractor who’d left a hole in her wall. We finished our good-byes with everyone else, and as we walked out the door, I was overcome with the feeling that I’d just seen her for the last time. That thought just descended on me with sudden clarity.
It may well be wrong; I’ve had morbid thoughts like that before, and they didn’t come true. But this one felt different. And if it’s right, it’s okay. She deserves to continue her journey, and to be whole again. Who knows? Maybe she’ll finally find Nanny.